RARE Daily

Rare Leader: Ashley Valentine, Co-Founder, Sick Cells

March 14, 2019

The Basics
Name: Ashley Valentine

Title: Co-Founder and President

Organization: Sick Cells

Social Media Links:


Disease focus:  Sickle cell disease a genetic blood disorder

Headquarters: Lisle, Illinois

How did you become involved in rare disease: My older brother, Marqus, has sickle cell disease. In 2015 and 2016, he became septic and we almost lost him. At that point, the disease was kind of beating him and we didn’t have any treatment. We were just given the option of waiting for the disease to finish him off and watch his body disintegrate over time. Fortunately, drug development has moved into sickle cell disease and in 2017, someone from Pfizer asked me, “Have you heard about Rare Disease Week and EveryLife Foundation?” I said, “No.” And then I did research and in 2017 we became active in the rare disease space.

Previous career: ESL Teacher, health policy researcher, clinical research coordinator, and currently consults to pharmaceutical industry.

Education: Bachelor’s degree in sociology with a minor in Spanish and music from the University of Illinois Champaign-Urbana, Master of research methods (MRes) from the University of Aberdeen

The Organization
Organization’s mission: Our mission is to elevate the voices of the sickle cell disease community through education, through changing policies, and through highlighting the resilience ultimately to end stigma.

Organization’s strategy: Our strategy is to eliminate the stigma of sickle cell disease. It’s been said that people are dying with sickle cell disease faster from prejudice and stigma than they are from the disease. And Sickle cell is a horrific disease. It gives people strokes and seizures, kills your liver and your spleen, and it messes up your kidneys. There’s all this pain and sepsis but because there’s so much stigma around this disease, the stigma is killing people faster because they can’t get access to care or doctors. That’s extremely alarming that people and behavior are ending lives. Our strategy is by helping people understand really what sickle cell is, who sickle cell impacts, and how they can help the sickle cell disease community, we can ultimately eliminate stigma. That will lead to more access to care, and in the process of changing hearts and minds, we also want to change policy to protect the patients.

Funding strategy: This is forever evolving. Our current funding strategy involves anyone and everyone who touches sickle cell disease. Our major grant money comes from a lot of the pharmaceutical companies right now. Our first major donation came from the leg ulcer care company, Enluxtra. We started reaching out to groups that took care of the co-morbidities of sickle cell. The other piece of it is a grassroots effort involving everyone. A lot of people interact with the sickle cell community unknowingly. Whether you’re a teacher, you’re a friend, you’re a boss, or any of those types of things, you’ve probably have interacted with sickle cell. Our second major donor last year was actually an LGBTQ kickball league in Washington D.C. We have this event called Wiggin’ Out and the fashion designer has sickle cell disease and is from the LGBTQ community. All of these drag queens show up and they model for us. It’s a special event because it’s this fusion of two communities that have had to deal with stigma. They come together for this one overlying cause and it’s so much fun. The kickball team last year gave more money than some of the drug companies.

What’s changing at your organization in the next year: For one thing, the funding strategy. And we are solidifying our programs and moving more towards being program-based.

Management Style
Management philosophy: Pull in as many experts as possible. That means we have a board of experts. I always am asking people for donations of time. Business development experts, policy experts, communication experts, photographers work with us. We will pull in any expert who can support the mission and help us do whatever we’re doing better.

Guiding principles for running an effective organization: Do a few programs and do them well. That’s one of them. We don’t have to be good at everything. We have to find our sweet spots and succeed at them. Since we’re not good at everything, we partner. We work with other organizations that have the resources rather than trying to recreate them. We worked with EveryLife Foundation for an email campaign when we were pushing hard for a sickle cell bill last year that Congress was going to put on the lame duck calendar. We worked with many organizations because we just didn’t have the bandwidth and others did. And then report on everything. In 2019, we’re trying to be better at reporting. We do have to report on outcomes so we can see what’s working and what’s not working. And then we can deliver those reports to our funders, our partners, and the network that we’re serving.

Best way to keep your organization relevant: Diversity is the best way to keep our organization relevant. That is across the board—diversity in thought, diversity in age, diversity in race, and gender, all of those things. America’s changing and growing and being able to have different people that have different backgrounds help you solve problems in different ways. Everyone has a different vantage point of that problem. Diversity has really helped us stay organized and blossom into an effective organization.

Why people like working with you: I would say it’s because even though I take myself seriously and I’m pretty serious person but, at the end of the day, you have to laugh. I do try to keep things positive and accept that I don’t know everything. If someone comes through with a really good idea, I try to figure out a way to give them the resources to make their idea blossom. And listen to people. We’re interviewing interns right now and they have so much energy. It’s energy that I sometimes lose. Making sure that they have the resources to produce and learn and grow and keep that energy going is something I try to do with every single person that works with our organization.

Mentor: I would say I have multiple mentors. For the sake of getting multiple, great ideas there’s Sally Turbyville. She on our board. She is my former boss, and she used to run a multi-million-dollar project on her own. As a woman who was high up and a mother, being able to navigate that is something that I aspire to be. Also, my mother is a mentor. My mom started her education late because she had a sick child with sickle cell disease. She was one of the first black nurses in her job. She’s dealt with everything that comes with being black. Coming from a lower-income situation, she worked with a certificate, then a bachelor’s degree, then a master’s degree. She’s made sure that we’ve had every opportunity. She always told us, “You’re good enough for everything.” We rode horses as children. I played classical violin. I was often the only black person in a space.

On the Job
What inspires you: The resilience of the sickle cell disease community inspires me. We go out and we talk to a lot of people. The stories that people tell us are absolutely incredible. There was one woman who was having a baby, but her daughter was hospitalized so she somehow convinced her body not to go into labor until her daughter was out of the hospital. She was able mentally not to deliver until she could get her other kid out of the hospital. There were two other guys—best friends. One has sickle cell and one was a caregiver. And they were in their early twenties and they realized that they needed each other. They were able to get through college and continue that relationship, that friendship through all the ups and downs of sickle cell disease. Or the other woman, who had a hip replacement while she was in law school. She had to schedule her hip replacement in between studying for the bar and taking the bar. She had to wait for a break so she could get her hip replacement, go through rehab, and then get ready to take the bar.

What makes you hopeful: What makes me hopeful is that people are starting to recognize sickle cell disease. There was a 60-Minutes special on it on Sunday, or it got a hit in The New York Times. We were in Kaiser Health News last year telling the narrative about how all the cards are stacked against the sickle cell community and have been stacked against the sickle cell community forever. Just now, people are living and able to share real stories about how the system has not worked for us. I think people are listening. The other piece of that is drug development. There’s lots of policy and legislation that have created this atmosphere for drug development to start in rare diseases as a whole. There’re at least 37 drug companies developing drugs right now for sickle cell diseases. There’s hope that our voices are being heard. It’s a new set of ears that actually care. We’re able to start fresh so that people aren’t stigmatized. They’re here, ready to listen. That is helpful for a lot of people in the community.

Best organization decision: We’re going to back to diversity, but I think that can be broken out into diversity in the people we work with, and also diversity in our partnerships. We work with a wide array of people. Not everyone is from the sickle cell disease space on our advisory board and staff. In a way, that allows for some of the brain to take over versus the heart. If you’re so close to the disease like I am, a lot of times you’ll react with emotion. The other people will say, “No, that’s not the best entrance. That’s not a great idea for the bigger picture. In the long run, this doesn’t do as well for the organization as it would if you were to do it a different way.” In terms of partnership, there are so many organizations that have been effective in terms of raising money and federal legislation, state legislation, grassroots networking, and getting drugs brought to market. Being able to partner with all of these other groups has given us tools and momentum. We’re not going into this sea of darkness about how to try to bring drugs to market, how to move federal legislation, or how to educate the community on all these things.

Hardest lesson learned: Learning to work to change people’s perceptions of sickle cell disease. I know what the stigma is, and I’ve experienced it. I was on a call once and the whole call stopped and the person leading it who was from a major federal agency, said to me, “Are you black? I couldn’t tell by your voice.” It just like froze me because I wasn’t expecting it. I was speaking confidently about the perception of sickle cell and how we had to go back and ask the patients, “Why do they participate in clinical trials?” Patients do participate in clinical trials but it’s being reported that they don’t. I said, “Maybe you should ask them.” And then that question came lobbed at me. I’m trying to take every moment as a teaching moment. Because my initial reaction would have been like, “Go jump in a lake.” But, that’s not effective. We need this person. I need them to understand where the sickle cell community is and how to make it grow better. When things like that are said, if I react with heart, the conversation shuts down. I have to have tough skin and I have to absorb moments like those and use them as a moment to gently say, “Um, yes.” Figure out a way how to say, “That’s not exactly relevant to the conversation but, what would you like to know? I can explain it to you.”

Toughest organization decision: We work with a lot of volunteer staff and we work with a lot of people. It’s always tough when we’re bringing on new people and how to make sure they get the resources they need to have to get the work done. With volunteer staff, a lot of people are working full-time in addition to doing this. The toughest organization decision was even starting a non-profit and then figuring out how to run it off of the resources that we have.

Biggest missed opportunity: I wouldn’t say they’re missed. I would just say that they’re still evolving. We want to tell stories in a way that we’re not able to do yet because we don’t have the resources. There’s just so much content and so many stories. But we’re not producing them as fast as we would like, or as visually as we would like because we don’t have the resources. We’re working towards figuring that out. We brought on new board members and there’s this consultant who is graciously donating her time to get the organization up and running and helping us fundraise.

Like best about the job: Meeting people with sickle cell and meeting people with these incredible stories—not even just sickle cell, just some of the rare disease stories. This is something I care about, and we are starting to see tangible results because of our work. The fact that a gay kickball league in D.C. knows what sickle cell disease is and shows up to a fundraiser, that never happened when I was a kid. The average person wasn’t talking about sickle cell disease and now, that’s starting to happen a little bit. That’s always rewarding and fun.

Like least about the job: I’m always busy. I’m so tired. I feel like I’m always tired, but this is my life as well. I do have to make sure to protect myself sometimes from getting overburdened. That’s something I’m learning to balance. Going to some of these medical conferences and the doctors will list when everyone’s going to die with sickle cell and all the bad complications and blah, blah, blah, blah, blah, blah, blah, and I’m just like, “I cannot sit through another one of these conferences.” When all you do is talk about life expectancy at 45. I know that’s not true because I’ve met people who are 65 and it’s just mentally exhausting. I have to try to go work and talk to people about sickle cell but, I’m just not feeling happy about it because I’ve just been through sitting through this morbid conference.

Pet peeve: My brother Marqus is the other co-founder and he doesn’t check his email as much as I would like him to. That’s my first pet peeve. I’m kidding. And then my pet peeve is sickle cell research doctors love to put a death date on sickle cell patients. Everyone told my brother, and many other people his age: “You’re not going to live past two.” “You’re not going to live past 10.” “You’re not going to live past 12.” It’s like every 2 to 5 years, they gave him a new death date. And that rattles a person’s soul. I’ve talked to people that also were given death dates and one of the women I talked to said, “You know, I didn’t think I was going to live past 25. I didn’t care if I finished high school. Why would I go to college if I’m not going to live past 25?” And then, she ended up having two beautiful children and she said that they almost changed her life because she had a reason to live. I met someone recently. Their child is 15 and someone came in and told them that their child wasn’t going to live past the age of 2 if they didn’t do a bone marrow transplant. That’s not reasonable. I think doctors don’t know everything. Some of the best doctors are the community doctors that are not in research that are using all their resources to take care of the sickle cell community. But some of these ultra-scientist research doctors, who don’t listen to the patients, give you their research rather than the lived experience. I get so frustrated at some of these research meetings because they’re presenting research and then I’ll be the first one to say, “You know, that’s not how it happens in real life. Patients aren’t dying at 40. They’re dying, but some of them are living. And you should really talk to the ones who are living to see how they’re living, to see if we can recreate the same situations for someone else.”

First choice for a new career: I’m really good at writing poems. I would want to write Hallmark poems. Like greeting poems. My poems are awesome. Awesome. Awesome.

Personal Taste
Most influential book
: Becoming by Michelle Obama and Kinky Gazpacho: Life, Love & Spain by Lori Tharps.

Favorite movie: Dirty Dancing Havana Nights

Favorite music
: I like all music. I play violin and so my genres of music are broad. I can listen to a mean Tchaikovsky or some Dvořák, but I could also listen to musicals or Cardi B.

Favorite food: Tamales

Guilty pleasure: Rom-Coms

Favorite way to spend free time: I’m an extrovert so it’s either talking with my friends or literally on the phone with whichever family member picks up.  

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